1. Introduction
Children with Cystic Fibrosis (CF) may experience elevated psychological symptoms (e.g., depression, anxiety) 1-3, as well as impairments in quality of life 4. Psychological symptoms in children with CF pose a significant concern, as there are deleterious associations between psychological symptoms and health outcomes 4-5. To address these mental health concerns and the barriers in traditional methods of mental health service delivery (e.g., limited resources, required travel), novel forms of service delivery (i.e., Internet-based programs) have been proposed as being viable and effective options 6. Innovative technology-delivered treatments for children with CF have been developed in other areas of CF care (e.g., physiotherapy, nutrition)7-8. Despite Internet-delivered programs being developed in other areas of CF care and in psychological programs for family members impacted by CF 6, to date there are no Internet-delivered mental health programs for children with CF. Prior to designing an Internet-delivered mental health program for children with CF, it is necessary to understand their information and service needs to tailor services appropriately 9.
The purpose of the current study was to explore the information and mental health service needs of children with CF from the perspective of children with CF, their parents, and health care providers (HCPs). There were five primary research questions: (1) What type of information about CF do children with CF need?; (2) What challenges do children with CF face?; (3) What types of services do children with CF need?; (4) What are the perceived benefits/drawbacks of obtaining service via the Internet?; and (5) What components should be included in an interactive, Internet-delivered mental health program for children with CF?